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Joining Forces Between Chronic Pain Patient and Drug User Advocates — a Worthwhile Endeavor

If you go to any chronic pain community on social media, Internet forums, or elsewhere, you’ll quickly find patients — who’re often under-treated, giving them good reason to be upset — who blame the drug-seeking habits of many thousands of opportunistic black market entrepreneurs and irreverent recreational drug users for causing modern American pain management to be where it stands now.

Even though I’ve never been doctor-shopping, or purposely visiting physicians and other prescribers with the intention of being prescribed one or more pre-desired drugs, we “addicts” — at least that’s what we’re often called by angry chronic pain patients and their advocates — I am sometimes still blamed for contributing to the opioid epidemic. And, even if I’m not directly blamed for doing such, I often feel like I’m being blamed for that thanks to the quite-often-angry attitudes and firey rhetoric of these deservedly-mad chronic pain sufferers.

What’s With the Finger-Pointing?

I won’t break them down, but there are several reasons as to why at least some members of web-based chronic pain patient advocacy groups actively place blame on us. It makes them feel better. They might feel like, since they’ve got an inherently-evil, dirty, negligent character in “dirty junkies” or “drug addicts” — I use quotations because they’re jam-packed with a lot of stigma and I try to avoid using them where appropriate (and avoiding their use is so very often appropriate — they have a better chance of getting justice in the form of pain management treatment that truly dumbs their symptoms down to a universally-manageable level… or, at least that’s how it seems like many of them think.

I think most chronic pain patients and other non-patient advocates know that blaming selfish, ruthless, objectively-bad “dopeheads” won’t get them anywhere. But maybe not.

Why Don’t Advocacy Effort Leaders Make Way for Change?

No cause or community wants to become known as salty, bitter, or toxic. At least not any advocacy group, that’s for sure.

While, of course, changing the collective behavior of an entire community member by member is difficult — and only possible to a certain degree, as some members won’t be willing to play ball — I still think it’s worthwhile to weed out this addict-blaming behavior from the crowd.

Now, as Drug User Advocates, Let’s Think About the Flip Side

I haven’t seen much conversion among the drug user advocacy, drug policy reform, harm reduction, and otherwise-helping-drug-involved-people crowd — I’ll call this “drug stuff,” for lack of a better wording — and the chronic pain patient cohort.

Where would these groups overlap, anyway?

Chronic pain patient advocates — and, surely, there’s a better name for this group than “chronic pain patient advocates”; this phrasing, although accurate, is fairly clunky — generally want to roll back the relatively-recently-implemented guidelines that have extensively limited opioid prescribing.

We, too, as “drug stuff” advocates, want access to a safe drug supply. Both of these — expanding opioid prescribing and opening up access to pharmaceutical-quality, reliably-dosed, otherwise-illicit drugs — involve expanding opioid access in a medical capacity. Although our goals are different, we ultimately want roughly the same outcome, give or take a few shades of variance.

Something Else We Both Want

It’s safe to say that most members of both groups want greater individual liberties. Although this is something virtually everybody supports, I think our — we (a) “drug stuff” supporters and (b) chronic pain patient advocates — desires are far different from most people’s ideas of “civil liberties.”

Lower property taxes is one of the most common requests from people who request expanded civil liberties. Here are some other common demands:

  • Taking away the often-viewed-as-unfair amount of power that law enforcement has to search and seize assets — police didn’t have this ability whenever the Founding Fathers formed the United States.
  • Blocking government agencies from conducting surveillance on innocent citizens.
  • Abolishing the cash bail system, thereby restoring low-income people’s rights to fairly develop a legal defense strategy. In modern practice, low-income defendants often plead guilty to crimes even if they know they’re not guilty because they’re so scared to fight the system.
  • Giving felons, parolees, and incarcerated people back their ability to vote and possess guns.
  • Severely limiting the ability of law enforcement agencies to use physical, corporal, sometimes-deadly.

We differ from most in that we’re not vying for less government involvement in general. Rather, at least in this category, we want better access to safe, legal, regulated, standardized drugs — particularly opioids.

And Another Thing

I think both of our sides can agree that we don’t like urine drug screens. Although medical providers — and especially specialized pain management physicians — can’t force patients to submit urine samples, in practice, they do, in fact, effectively force patients to put up with drug screens.

Refusing drug screens, as we all know, regularly results in getting fired from a pain management program.

Illicit drug users like me don’t like drug screens. Although, yes, I recognize utility in drug screens because they can prevent heavy machinery operators from potentially harmful situations. Here’s the big issue, though — cannabinoids, for example, can stay in our systems for well over a week, if not a month; how can an employer reliably infer that an employee is under the influence of psychoactive drugs at the time of screening if they test positive for long-lingering cannabinoids or drugs with long half-lives like buprenorphine or methadone?

They can’t.

As we all know, although we can’t really have drug screens forced upon us unless we’re on probation or parole or incarcerated. However, just as in the doctor’s office example above, oftentimes, entities that ask for drug screens are typically able to weasel people into taking them. It’s not just doctors’ offices.

People who work for state and federal departments of transportation are usually required to remain abstinent from drug use at all times, even in their personal lives. Just like the heavy machinery operator can be fired for “dropping dirty,” as we often call it, even if they aren’t actually high at the time of testing, other transportation industry workers are subject to similar treatment.

Such policies allow employers to extensively control employees’ lives — oftentimes, it’s not like people can just up and leave one day from their jobs; as such, people who are disproportionately affected by such invasive policies often feel trapped… it’s just not very cash money.

Not cash money at all.

Here’s one caveat: physicians may be able to prevent serious adverse drug reactions and even death by administering drug screens. For example, if a pain management doctor’s patient tests positive for a benzodiazepine, he may warn the patient to cease benzodiazepine use, require them to promptly report for random drug tests at any time, or even outright fire the patient, thus potentially cutting them off from the misused opioid analgesics that could end up taking their lives.

The same caveat holds true for protecting workers from the threat of heavy machinery mishaps. I’m sure there are several other caveats, too.

How Can We Overlap Our Two Causes?

Unfortunately, I don’t know, exactly, how we can get the show on the road.

If you regularly use social media or a web-based message board and are a “drug stuff” advocate, consider engaging with chronic pain patient advocacy circles to potentially turn them on to the idea that we could get more done by joining forces. Now, I will say this: In general, using social media to change other people’s minds is silly. This is not, at all, “advocacy.”

It might feel like advocacy, but it sure as hell ain’t. With that being said, I’m not otherwise aware of how to turn these people (pain patient advocates) on to the potential of merging at least some of our advocacy efforts.

Time to Wrap It Up

I usually don’t like writing about things unless I have concrete, do-able recommendations, strategies, or tweaks to share. This is one of those times where I’m shit outta ideas — but, since this’ll need to be a collaborative effort throughout the “drug stuff” and the chronic pain patient advocacy communities, anyway, you should share your ideas with me, directly, or either of these communities at large.

By Daniel Garrett

I'm a self-employed writer, long-term drug user, and resident of rural Tennessee. Find me on Twitter at @DanielGarrettHR or email me at danpgarr@ut.utm.edu.

One reply on “Joining Forces Between Chronic Pain Patient and Drug User Advocates — a Worthwhile Endeavor”

I enjoyed your article and in the near future would like to make some positive remarks and insights on what you had to say. In the mean time there is one thing you said in your article that everyone should STOP saying NOW if you hope to ever get cooperation between the pain & addiction community and that would be this statement. ” Now, I will say this: In general, using social media to change other people’s minds is silly. This is not, at all, “advocacy.”It might feel like advocacy, but it sure as hell ain’t”

On this you are sure as hell wrong. In the pain community there are people who cannot walk and don’t have mobility assist devices to get them anywhere. Some are poor and cannot afford the means to travel anywhere to be involved. Some are entirely bed or home bound and social media is literally their only outlet to use their voice. Some want to be involved but don’t know how and are using social media to find out. Some don’t have the basic electronics to attend virtual meetings etc… This community is full of people among which some are desperately ill and disabled and reaching out via social media is literally their ONLY means. Social media has been one of the most important tools we have and has grown the movement for both the pain community and addiction community. To tell a sick, suffering, disabled person whos only means of involvement isn’t good enough and doesn’t count as advocacy is stigmatizing, cruel and just wrong. For some people its all they have.

Despite the awesome article that you wrote I can assure you when you said that you lost a lot of people who would otherwise have been applauding you. This is a common issue in the pain community. Most people actively involved in advocacy know the source of the line of thought and it has caused enormous consequences and conflict. You cannot tell people to get involved and then tell them the best they can do aint good enough.

I am an untreated chronic pain patient. I was an advanced cardiac life support medic for 26 yrs. I worked in emergency medicine and trauma/ICU/Hospice. I also spent 3 yrs working with the addiction community. I was a medical documentation specialist and after my disabling injury I became a Theologian. I see this issue from both the professional and patient side of things as well as seeing it from the legal and if you will spiritual side of things. You and anyone else who says it have got to STOP telling people their effort does not count as advocacy, especially when its all they have to offer.

Mark 12:41-44
The Widow’s Offering
41 Jesus sat down opposite the place where the offerings were put and watched the crowd putting their money into the temple treasury. Many rich people threw in large amounts. 42 But a poor widow came and put in two very small copper coins, worth only a few cents.

43 Calling his disciples to him, Jesus said, “Truly I tell you, this poor widow has put more into the treasury than all the others. 44 They all gave out of their wealth; but she, out of her poverty, put in everything—all she had to live on.”

Respectfully,
Leah R LoneBear

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